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Monday, 24 February 2014

Transplant

Day after my transplant.

On the 5th of March 2013 I finally had my transplant.

I was in hospital finishing off treatment for pleurisy, one of the many fun lung problems I used to get. It was close to midnight and my Dr came in to see me. He often came to see me late so I didn't think much of it but he was acting a bit strange and asking me odd questions. Then he said with a big smile on his face, "We've found lungs for you" . I think my first response was, "oh, really?". I was in shock. When you're waiting for a transplant you're always on edge waiting for those very words and as much as you try and prepare yourself, you can't.

He proceeded to tell me that I would be operated on at 6am. I quickly phoned my mom and she came to the hospital with my aunt (Heather), brother, a family friend (Debbie) and her daughter (my friend, Siana). We all sat and chatted for a bit, then I tried to get some sleep. I had a thorough bath, signed a million forms and chatted to all the different medical staff. Then I was wheeled off to theater, which as I'm sure you can imagine was pretty nerve wracking. They say you have a 50% chance of surviving a lung transplant and you are encouraged to say your goodbyes and be prepared to not come out of theater. Well, I think I vaguely prepared for that but I was 100% sure I would make it so my concerns were for how I would be feeling when I woke up!

I had the most amazing surgeon who took one lung out at a time and put my new lungs in. My cystic fibrosis doctor (Cathy) watched the whole thing and whatsapped my family to keep them updated. 8 hours later I was out of theater and in ICU. I was on a ventilator to let my new lungs rest, you can be on this for up to a week depending on how your body reacts to the surgery. Less than 24 hours later I was off the ventilator and breathing completely on my own. AMAZING!

Of course you are on so many drugs when you first wake up that you are very confused. Family can view you through a glass barrier but can not come into your room for the first few days. This was very difficult as I really needed the support of my family but we were forced to just 'sign' to each other. My doctor,physiotherapist and psychologist were great and they came in to try and comfort me. Unfortunately this was not enough and between the lack of family interaction, the meds and the horrible ICU environment I started to develop ICU psychosis. I believed the nurses were trying to rape and kill me. Watching other patients next to me being restrained and having a lot of male nurses help me onto my bed all added to this delusion that I truly believed to be reality. I believed it so much that I pulled out my catheter and was attempting to pull out other tubes so that I could 'escape'. Luckily the nurses found me in time and no damage was done. Given any longer I would have either seriously hurt myself or managed to reach my medication so that I could overdose myself.

ICU was more mentally challenging than physically. Pain wise, day two was very bad, I was in a lot of pain, largely due to the one medicine I had to be on. I counted down the seconds until I could have my next morphine dose and I immediately wondered if I had made the right decision having a transplant. This pain settled and then it was purely a mental battle. After a week they moved me into my normal ward and the psychosis stopped straight away.

First day out of ICU (NO OXYGEN)

The next mental battle was getting used to not needing oxygen. I had spent so long needing oxygen that it was deeply engraved into my brain that my oxygen pipe = breathing. When they took away my oxygen I was petrified. I kept checking all the machines to make sure I was still breathing. I managed to cope during the day but at night I couldn't sleep without feeling my oxygen on and it took me a few months to wean myself off of it. It's a strange concept that to me being sick is normal so to feel normal was NOT normal for me and freaked me out. (If that makes sense?)

< Still bandaged
up with all my drains etc.

Bandage off and drains out >

(Excuse the boobs, not ideal being a girl with chest problems. I've had to flash more people than a stripper)

Next thing to do was to start building up some strength. Being in ICU completely unable to move means you lose A LOT of muscle mass and you literally need to learn how to walk again. Slowly I began short walks, with lots of support. I would just walk to my door and back at first and then gradually further and further until I could reach the nurses station.

Then my first hiccup hit. My lymphatic system, which is your body's drainage system decided to be lazy. This meant that I had fluid build up everywhere and I was so swollen and uncomfortable. My stomach also decided to be lazy and I was unable to go to the toilet for well over a week. So I was swollen with fluid AND swollen from constipation. We tried everything to get my stomach working, I won't go into details about that but it wasn't much fun! Eventually my stomach worked and slowly my swelling started to go down.

Unfortunately my lungs also had a fluid build up and they had to be drained. This meant that a VERY THICK NEEDLE was put into each of my lung's plueral cavities through my back. The excess liquid then just poured out, nearly 2litres of it. A very unpleasant experience but I had a great doctor doing it so he tried to make it as painless as possible.

Nearly three weeks after my transplant, I was ready to go HOME. Driving home everything felt so surreal. I had left my old lungs at the hospital and was going home with someone else's lungs in me. Medicine is amazing and I'm in awe every day at the fact that I was able to have a double lung transplant.

This, unfortunately was not the end of my transplant journey. There was an even bigger hiccup to come and that set me back months. Read my next post to find out what happened.

Don't forget to register as an organ donor HERE and leave me a comment =)

I know this is random and completely strange but I remember seeing you at Chisi and thinking you were such a beautiful girl. Every time I saw you, you were always laughing with your friends and had the biggest smile on your face! You were my senior at the time. I always knew there was something different about you. Your eyes held a diffident story to how you carried yourself on the outside. I have been following your story for a few years and I wanted to let you know that you have inspired me so many times. All I can say is you are absolutely amazing, more than awesome would be the word to describe you, and wonderful is just the beginning of how you make me feel!!! With what seems like almost no effort at all, you prove yourself to be more and more incredibly amazing every day. You are capable of making a difference in others. It may be in the words you speak or a smile you give. You have the courage to admit that you're afraid and yet your facing the fear directly. You are strong enough to ask for help and humble enough to accept it. I hope I can inspire you as you have inspired me.... You'll experience days that knock you down but the important thing to remember is not to let those days ever take away your beautiful smile. Always believe in yourself and don't forget who you are, what you are, how much your worth and what you deserve, nothing else matters!!!All the best! -CJT (bean)

Wow thank-you for a lovely comment and such beautiful words! I had an awesome time at Chisi and whilst I missed out on a lot of school and couldn't do any sports I always felt 'normal'. I just had this little 'thing' that I had to deal with every day but I didn't let it feature more than that in my life. Even now, my transplant is a part of who I am but it's only a small part. I'm so glad I have inspired you and I hope to inspire others with my blog. My message isn't to be strong or fearless, it's simply to keep going, focus on the good things in your life and not let the bad get you down. xxx